March 20, 2013
Nicole Price switched from condoms to birth control as a form of pregnancy prevention with her long-time boyfriend, thinking that HIV was something that happened to "other people." After they broke up, he got sick, and she discovered that they were both HIV positive. Before her diagnosis, she had a troubled past that included meth use and dropping out of high school. Since her diagnosis, she has graduated from college with a degree in computer technology, become a program manager at the BABES Network -- YWCA in Seattle advocating for women with HIV, and has learned the importance of being non-judgmental.
Though hip surgery has made walking a chore for her in the past year, Nicole never misses a chance to dance on the weekends. Dancing is her de-stresser and her main form of exercise. She loves live music, she actively dates and she has found her voice by helping other women become educated and take control of their health. She is living proof that HIV is not a death sentence -- quite the opposite, it's given her a new life that she is proud to live!
Can you start by describing how you found out you were HIV positive?
Well, it was September of 2000 and I had been dating a guy for five years, but we broke up. And it had been a year since we had broken up and he got really sick and wasn't sure what was going on. He was having really bad flu, and didn't know what was going on. We were still really good friends and cared about each other. He ended up in the hospital, and about two weeks later, found out he had full-blown AIDS. So, he told me, and then I had to be tested. And I had to wait two weeks for the results. That was a very long two weeks. And I also tested positive. That was the end of October of 2000.
And how old were you then?
What did you think and how did you feel when you got news of the diagnosis?
Since I had to wait for two weeks, I had some time to think about it, researched a lot online. Kinda was trying to diagnose myself. I had an idea that I had it because I had gotten flu-like symptoms two years before, and got really sick for about two weeks straight. I couldn't keep anything down. So that kept sticking in my head. I had a good idea that I was going to be positive. But I was hoping I wasn't. When I got the news, I was in shock. I didn't speak, I didn't cry. I had a girlfriend with me, and I was just silent. I didn't talk probably until the next day; I was just in complete shock.
How long did you feel that way?
I was like that for two weeks, and then I started to get better, but I was probably pretending that it wasn't happening. And my ex-boyfriend was really sick, so I was trying to help take care of him when he got out of the hospital, because we were still friends. I was making sure he was taking his meds, and everything, because he had two opportunistic infections, so he was really sick. I kinda focused on helping him, and not thinking about it. And my counts were really good at the time, so I kinda just put it on him. I am a caretaker, so.
What was the first thing that you did that helped you come to terms with your diagnosis?
At first, I didn't want to tell anyone. I didn't want to tell my family and let them down. I was a meth user and I dropped out of high school. And I felt like, "Here's something my parents can't save me from, or fix." And I just felt horribly awful. So, I didn't tell them at first, but I think once I started telling my parents I felt better. I had someone else help me tell them, and they were very supportive. And once I started telling people and learning more about it, I felt better about it.
Did you realize that you were at risk for HIV at the time you were infected?
No, I had no idea. My boyfriend was 12 years older than me. We did use, but I never used injection drugs. For the most part, we used condoms. I was always worried about getting pregnant. So once I started birth control, I didn't even think of it. I mean, you don't think that things like that are gonna happen to you. That happens to other people. So, no, I never thought I was at risk.
What ended up happening to your boyfriend?
He ended up getting better. He started medication right away, and was doing really well. He got clean. I struggled with getting clean; I think I was trying to hide from a reality. But, he ended up getting better. We were going to get back together at that time, but we decided not to. But he started to do a lot better.
So, you believe you know, with certainty, who you got your HIV from.
Were you ever able to talk to him about whatever feelings there were from you about being infected by him?
Well, he felt really guilty because I was so much younger, and I had never done any drugs before. So, he had this guilt that he got me started on meth, and now, here, he gave me HIV. And I was young, and he felt really guilty about it. But, I didn't blame him. He didn't force me to do drugs. I didn't say, "Let's go get tested together." "Here, let's use condoms." He didn't really know about it, so I was never really upset with him about it. He was, sort of, after I was diagnosed, a big brother to me. He was trying to help me get clean and help me get better. But I was never really mad at him for it. It's my responsibility too.
Did you say that your parents were the first people you told about your diagnosis?
No, the first person I told was an older woman that was trying to help me get clean. A friend of the family. I called her from the hospital. And, then, one of my girlfriends went with me to get tested. And I told another couple of friends. And then, of course, it kind of got out to other people.
How did you start the conversation when you would disclose to people during that time? That first person you told, that mentor, how did you start that conversation?
Well, she knew that he had been sick, and we all thought it might be cancer or something. We had no idea. So, I called her from the hospital and told her, "He has full-blown AIDS. And, there's a chance I could have HIV and I need to get tested." And that's all I said to her. But, once I started, it was pretty easy for me to tell, it was sort of this feeling of relief to tell people. So it wasn't that hard, it's just, "He was sick, we found out what it was, and I have HIV." I was maybe a little too honest about telling folks.
Was there any filter? How did you make the decision whether or not to tell a particular person you were positive?
No, there wasn't [Iaughs]. You know, I told the people that I worked for. I had two different jobs. I was waitressing, I told them. There wasn't really any set format that I used. I just told them. I figured, if it could happen to me, it could happen to anyone. And a lot of people should know about, because they don't really think about. They think it happens to other people who do different things.
How have your relationships with your family or your friends changed, if at all, as a result of your diagnosis?
I had one friend that, we kind of had separated because I started doing drugs and she wasn't. But we had been friends all through school. I think it was really hard for her. When I told her, she was scared. She didn't know how to react. That situation didn't go very well, but since then we've talked, and she said she was scared, and didn't really know, and felt guilty for not being there for me. But, for the most part, I've had so much support from my family and friends. Haven't really had any negativity or anyone shutting me out.
How has having HIV affected your relationships and your sex life?
The first time I had to disclose was really scary. There was this guy that really liked me, and I had just found out. Didn't really want to tell him the big news. It went really well, I was really lucky. I told him. His wife cheated on him, so he went to his doctor and got tested for everything. Talked to his doctor about me and what precautions he needed to take to keep both of us safe. He just told me that it didn't make him think any different of me, and he still wanted to pursue this relationship. He was the first guy that I told.
I really have had good experiences with dating. I had a guy that I really like when I first moved here to Washington. I met him on a dating site, and he thought, "Wow, that's really cool that you're so upfront about it, but I really need to think about this one." And I understand. It is a big deal. I didn't talk to him for a few weeks, and then he called me up and invited me over to watch a movie with him and his kids, and I had a big pimple on my face, so I didn't want to go. But I thought, "Hey, that was nice, he thought I was cool enough to give it a shot." But, I never went out on a date with him again.
But, now that I'm single again, I'll tell you that it is a barrier. It's not like a broken toe. It is a big deal. I'm pretty confident with myself, and I'm pretty educated around HIV, so I feel that I can educate someone. And if they're not going to accept me for who I am, then I probably don't want to be with them anyway. So, I'm not in a rush to get into a relationship right now, just coming out of one.
Does it frustrate you that you have to be in the position of educating them so that they understand enough to accept you. In other words, that must be an odd position to be in. You're trying to date someone, and they may not be too cool with it, and you can't really educate somebody so that they'll date you, you know? You're facing that societal ignorance on a personal scale.
Yeah, it's frustrating. Because, it's hard enough to be rejected in any circumstance and this is really hard. It's such a chore to have to explain. I've done it enough, but it still doesn't make it easy. It's still hard every single time I do it.
Do you have a way that you usually say it to people?
No, not usually. There's not a format I follow, but I don't wait too long, because if you let your heart get into it too far, then you're gonna end up hurt if they decide "No way," or they're gonna get upset with you, like, "Why didn't you tell me before?" But you also don't want to be like, "Hello, I'm Nicole, I'm HIV positive" right away either, you want them to know you as a person first.
I will usually, maybe after a few dates, tell somebody that there's something I'd like to tell them about. Sometimes people need a little time to think. Some people will already know, or they have a family member, or a friend, or a friend of a friend, who has HIV. I can share some information or someone else to talk to if they'd like to talk to someone about HIV or transmission. They can come to an appointment with me or an educational function to learn more about it. It's not fun. [laughs]
Tell me something about your family background. What kind of neighborhood did you grow up in? And the reason I'm asking this, is, whatever that neighborhood was, do you believe it's easier or harder being HIV positive in that community versus the other options or the other luck people could've had?
I grew up in a middle class family in a suburb my whole life in Santa Rosa, California. My parents are very conservative, and a lot of my family is very conservative. I don't know, I feel like I got really good feedback from my family and friends and people in my community. I was 25 at the time, I had moved out of the house, and I was doing different things. From my experience, I had really good feedback from the people that I know. Recently, I put on Facebook, "Today is World AIDS Day," and I was doing a fundraiser for BABES Network -- YWCA, where I work. I sent it out to my friends and family, and I said, " I'm trying to raise money for this great organization. For those of you that don't know, I've been HIV positive for 11 years," and I put in parentheses: "If you don't know, you do now." I was wondering if I was going to get a bunch of messages from people, or if people were going to delete me off Facebook. But nobody said anything, but I did get a few emails saying, "Wow, I didn't know that. You look so good and you're doing so well. It's really good to see." In my situation, I feel like I had really good luck.
Did you do well, with that appeal, for the fundraiser?
Yeah, we did really well. The dollars are still rolling in.
Tell me about your health care and treatment. What has your health been like since you've been diagnosed?
I think that when I was first diagnosed, I had a lot of depression and anxiety. Mostly anxiety, but it was causing depression. I was sleeping a lot, I was trying to hide. And then, I didn't have to start meds until four years into my diagnosis, when I ended up here in Seattle I started. Once I got clean. I had some problems with warts and feeling fatigued, but that was about all. I was really tired and rundown and feeling yucky for about, I'd say about two weeks, but then my count started getting better, and my viral load went down to undetectable. I've always had stomach issues; I've had IBS [irritable bowel syndrome] since I was a teenager, but I still have some of those kind of side effects, the nausea and the diarrhea stuff. But if that's all I have to deal with, I can handle it.
How did you find your HIV specialist?
When I was in Sonoma County, the clinic that tested me gave me a packet. And I went to the Sonoma County Health Department, Face to Face was the program. I got my doctor there. When I moved up here to Seattle, I got referred from BABES Network, where I work right now. Wasn't working here at the time, but they gave me referrals and got me all hooked into care management and got a provider. Now, I have insurance through the YWCA and I go to GroupHealth.
What kind of relationship do you have with your doctor?
I have a really good relationship with my doctor. I'm very open and honest with her, I feel like I can talk to her about anything. I feel very privileged, because I think it's very important that you have a good relationship with your doctor. And that you're being totally honest with everything, because they're going to be your advocate for helping you stay healthy.
Do you keep track of your CD4 count?
Yes, I do. It's 976. And undetectable. But I've been 1,400, 1,100. I'm usually around 1,100.
Over 1,000 is really remarkable.
Yeah, so I'm really happy about that. Because when I started meds, my T cells went to 130.
What else do you do to keep healthy? Do you have an exercise or a diet program that you subscribe to?
I really enjoy dancing. I go dancing on the weekends. but I'm really busy at work. I think one thing that's really fulfilled my life -- I'm not happy I have HIV, but when I started working for BABES Network, and doing speaking and helping other women that are HIV positive, telling my story, getting more education, I think that has really helped me heal a lot, by helping others through their diagnoses and educating them. That's really made me heal quite a bit. And just learning. I try to eat healthy, I'm not a real health freak, but I try to eat well. I love to go out dancing, I love live music. I had hip surgery last March, so it's hard for me to go on walks or anything too far.
You are very trim! You don't have a big diet regimen?
I do a lot of dancing. Pretty much every weekend I like to go dancing. It's good exercise.
You've talked about the BABES Network. You were not engaged with the BABES Network before you were diagnosed with HIV. What were you doing before you were diagnosed?
Before I was diagnosed? I went back to college to get my degree in computer technology. I was at a little technical college in California when I found out I was positive. I did graduate, which was exciting, on time, with my class, which meant a lot to me, because I didn't graduate high school. At least I was able to complete that, even though it was really tough finding out I was positive during that time. But it was the year 2000, everyone was going to school for computers, so it was really hard for me to get a job, so I was working at a high school as a campus supervisor. I did study hall, Saturday school, detention, walked the campus, walked kids to the office when they got in trouble. That's what I was doing at the time, and I was cocktail waitressing in the evening at a little bar in the town that I worked at, so that's what I was doing for work.
So, the trajectory of your vocation really changed as a result of that.
Right. Well, one thing about California is that there was no peer support network. I didn't really know anyone else that was positive. There was a place where I got my health care and information, and I went to a support group with a therapist and a few other women. So, I didn't really know what it was like to talk to other women that were positive. It was really great to find BABES, a peer support program where everyone was positive, that was really neat and very supportive.
How did you become involved in HIV activism?
I sort of fell into it. The reason I ended up in Seattle was because I had gotten clean from meth. I had been clean for about a year, but I was having a tough time. I had to give up all my friends, I was working and really kinda lonely. I had a little Pomeranian, and he was my buddy, but I was having a rough time. So my mom lived in Washington, and so I moved here. She found BABES before I got here. She said, "Oh there's this place."
I came to a support group when I first got here. I met the executive director and she said, "You know, you'd be really good working here." They had a position open, I applied. I think the only thing they were worried about was that I had only been positive for three years, and clean for two. I said, "I'm ready. I want to do this." Which I never thought, when I was first diagnosed, I didn't want to talk about, didn't want anything to do with it. When I got the job, I started out as a peer counselor/ event coordinator, and then worked my way up and became the lead peer counselor/ event coordinator, and just last July I got promoted to the program manager. I've been here for seven years, and I'm really happy.
Don't you ever get tired talking about HIV?
No, I don't. I mean, sometimes I have a hard time with losing people. That's hard, because we call BABES a "sisterhood of women facing HIV together," and when women pass away it's really difficult and scary, because I could be in the same boat. I do take care of myself, I'm really diligent about doing all my appointments like I'm supposed to, I never miss my meds. Maybe once every couple of months, but I'm very good at taking care of myself.
You mentioned the peer support aspect of the BABES Network as something that makes it unique. Is that the mission of the organization?
Yeah, we're a peer program. So, we provide one-on-one peer support for women and their families living with HIV. We do support groups, advocacy, retreats, we have a newsletter that goes out that's written by our members. We provide referrals to medical and case management and other support services that women need.
What has doing this work taught you?
It's taught me a lot. It's taught me not to be judgmental. That it takes all kinds. That people come from so many different walks of life, and you can't generalize someone by just looking at them or hearing them say a word. You just have no idea; it's really brought so much fulfillment to my life. I had no idea that there was so much more out there than just this little world that I was living in.
What do you think are the biggest issues that need fixing in HIV today? What do you tell people that they might be able to do to change whatever that is?
I think people think that it's kinda gone away. People think, "Oh, there's a cure," or "There's medications, people do fine, it's not a big deal." The funding is getting cut all over the place, there's waiting lists for people to get on medications in America. Which is just beyond me how that's even possible.
I think it's really important for people to understand that it's important that they advocate. If we don't stand up and fight for what we need, what we demand, that we're not going to get it. I think that women are a minority, and a lot of people don't think that HIV can happen to women. But there's a high percentage of women who are positive in the United States, and a lot of women don't realize that. I think that women really need to step up, because we are really getting pushed underneath the rug and forgotten about.
Could you compare your feelings about living with HIV now to your feelings when you first found out you were HIV positive?
Well, now I still have my moments. There's times where I just get mad, and "Why did this have to happen to me?" and I have my little pity party and I get over it. In the beginning, I just kind of walked around in a cloud for a while. I couldn't believe that something like this could happen to me, and "Why?" I still have those moments sometimes, but I do believe everything happens for a reason. That's why I feel like doing the work that I do is very important, and maybe that's the reason. I'm saying, I'm not excited about it, I'm not happy about it, but I'm making the best of it.
Has your being able to look at it that way, is that what has changed for you? How has HIV changed you, or has it?
Yeah, of course, it's changed me a lot. I feel like I'm a much better person. I feel like, if I wasn't diagnosed, who knows where I'd be. I really wanted to quit doing drugs, because I wanted to be healthy and take care of myself, so I often wonder where would I be had I not gotten that huge news.
What advice would you give someone who was just diagnosed HIV positive?
Educate yourself as best you can. Learn as much as you can. Make sure you're looking at information that is up-to-date and factual, because there's a lot of information that isn't. Find a support network. Find someone else that's positive that you can share with. You know, not everybody feels positive disclosing to their family and friends, but finding someone that can give you that support and education. Going to your doctor and making sure that you're right on top of your health. Women sometimes put themselves on the back burner, they want to take care of their kids, their husbands, their jobs, their house, everything else before themselves, and you're not going to be able to take care of everyone else if you're not taking care of yourself.
Is there anything else that has not come up that you would like to discuss or like to include?
One other thing that I thought of when I was diagnosed was, "I'm 25, I'm never gonna get married, I'm never gonna be loved, I'm never gonna have children." And, I'm really glad to know that that isn't true. Here in Washington State, there's a very low prevalence of babies being infected with HIV. There are medications you can take, and the baby can take, and there's only a 1 percent chance. It's awesome. We have lots of babies -- babes, we call them -- being born.
I remember, in the '80s, even into the '90s, the idea of a woman having a baby who was positive was quite provocative. Even seen as irresponsible. Has that changed? Can she now do it with confidence that she's not making a choice that is a dangerous one?
I believe so. I think for herself, you never know. There may be a doctor out there who thinks it's not a good idea, or a family member or a friend. But if you read the facts -- if the woman's viral load is undetectable, and she's on medications, then when the baby is delivered, you can have a normal birth. You may get intravenous HIV medications while you're having the baby, and then the baby gets a liquid medication for the first six weeks of their life. I've seen women give the medicine to their babies, they don't seem to have any problem with it. The babies don't have any side effects and they don't get sick. It's definitely possible. It is toxic medication, but it's only for a six-week period and we haven't seen anything that shows that it causes any long-term side effects, so that's wonderful news.
This transcript has been lightly edited for clarity.